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Giving in isn't giving up

I had the pleasure of stumbling upon a few online discussions regarding my book recently - which is just about as thrilling as it gets for a first-time author. (You mean people are actually talking about my book? On their own? Oh my!!!) One thread of comments really hit home. It was in regard to the fine distinction between fighting (the disease, your body, the limitations) and giving in (giving in to the disease, slowing down, accepting that you can't do it all). Many people (me included, until I wised up), assumed that giving into the disease (slowing down, saying "no" every once in awhile, reassessing one's responsibilities at home and at work) was the same as giving up - that if you stopped fighting, you were letting the disease win. (I believe the discussion was in regard to my decision to go part-time at work years ago...that by doing so I was giving up the fight, rather than sticking it out and not letting the disease get the best of me.)

And this is a fair assessment - I, too, thought the same thing...for way too long. Giving up my career and letting go of my identity at work were two things I desperately tried to avoid. I held onto them as if my life depended on it. What I came to realize, however, is that what my life REALLY depended on was the ability to put aside my ego, my pride, and my stubbornness, look outside the (career) box that I had lived in for so long (and liked!), and say, if I make this one concession, look at the life I'm going to get back. Making this one accommodation wasn't going to ruin my life - it was going to save it.

In my opinion, giving in was the only way for the disease and me to co-exist. If I'd kept fighting, I wouldn't have been around to tell you about it. And I believe that's the decision many of us come to - we realize we're not invincible and that we can't do it all. We just have to figure out how to let ourselves off the hook for once. We have to learn how to stop, take a moment to listen to our bodies, and respond accordingly. We have to work with the disease, rather than against it.

One women echoed these sentiments, putting it better than I could. She said, in reference to someone else's argument that not everyone can quit their job as I did, "You're right. Not all of us can work part time or stop working altogether. I think, though, that there is a difference between giving up the fight and giving in completely. I am to the point where I am finally accepting that I have this disease and that sometimes, I have to defer to it. If that means lightening my work load or skipping out on some of my social obligations, so be it. (Ms. Gorman's) description of how she learned to stop fighting and listen to her body is exactly what I'm going through right now. It's hard to realize you're not invincible and you can't just work through the pain and fatigue...I have tried for years to keep up with work and school and social activities, telling myself I was fighting lupus by living the life I wanted to live, regardless of the disease. But I'm to the point now where I know I can't fight it anymore. I am exhausted and unhappy all of the time because I just can't keep up. I can still do all of those things, but I have to slow down if I want to take care of myself. "

I haven't talked about my decision to stop working in awhile - but I just thought I'd highlight a few points that are sometimes lost in translation when I talk about leaving my career behind. Yes, I quit my job, and yes, I was privileged and lucky and fortunate. But sauntering into my supervisor's office to tell him that I couldn't keep working full-time because my body couldn't hack it was one of the hardest things I will ever have to do. On so many levels, I felt like a failure. But there was one reason that I persisted - that allowed me to walk in and resign from the management position I so dearly loved. Because at that point, my life wasn't worth living, and I knew I had the power to change that fact. I knew that if I let go, I'd get back the life I deserved. I could once and for all stop fighting life, and start living it.

So why was the decision to stop working so difficult? I know, I know. On the surface, it would seem like every person's dream to be able to just walk away from a job (or work part-time, which is what I did) in order to focus on health and wellness. But it's never that easy. Here are just three of the reasons I was considering at the time:

1) I was the sole bread winner at the time I went part-time. Yup - that's right. Johnny had gone out on his own and started a business a few months beforehand, and was still ramping up. Sure, he had the potential (in the years to come) to make his fair share of our household income...but at the time, he was making exactly zero. Ziltch. Zippy. So to say that I had the luxury of reducing my salary because I could rely on my husband isn't exactly true. What is true, is that my health deteriorated so badly that I knew it was now or never - either I make a switch and we deal with less income, or I watch my body spin out of control for ever. It was so hard to give up that money. But you know what? It was only money. And we realized there are a ton of ways to save money....when you really have to.

2) Thinking it is entirely different than doing it. I'm telling you - saying you're going to/would like to/wish you could step down from full time work is easy. It's kind of like wishful thinking. But realizing the moment has come for you to actually make it happen is an entirely different story. In theory, we all may say we don't want to work. But actually going into your supervisor's office, saying you're not strong enough or healthy enough to keep doing what everyone else can, is about as tough as it gets. It takes courage, and strength, and resilience. You have to be a fighter to do that...so don't talk to me about not fighting. That was the greatest fight of my life right there. When I walked out of the office after coming to the agreement with my boss to work part-time, I thought, "Alright now. I think I might just win this thing."

3) Along those same lines, your identity, whether you like it or not, is typically intertwined with what you do for a living (at least it was for me.) You work hard in school to make this happen. You work even harder AFTER school to ensure that you're valued and appreciated for your efforts; that your worth isn't overlooked or underpaid. So what happens when all of a sudden, you change gears? You suddenly have to tell yourself that your identity ISN'T what you do, and you have to convince yourself that you're worth something even if you choose less pay, or less responsibility, or less prestige. Everything you had built up in your head as worthwhile and worth fighting for becomes obsolete. Telling yourself that you can still contribute and that your self-worth isn't decreasing is tricky. You have to work at it. In fact, you have to make a career out of it. But allowing yourself to become a happier, healthier individual enables you to become everything you want to and more. And for years to come.

There you have it. Just a few things to consider when you think you don't have it within yourself to make the changes you need to in order to live well with a chronic illness. I don't regret one move I've made...only the time it took me to wise up and make them!

Ah, yes. The reassessment. :) I suppose the fact that we even know enough to step back and take a break is indication of growth in our disease. For so long - thinking "tough", as you say, was the only way I knew how to cope. It's refreshing, I think, to have created other options for myself, particularly when those options leave me feeling a whole lot better!

I too was recently diagnosed with Lupus and was off work for 10 months. While I was off, I realised that it's not the work that was stressing me out - it was the complete unpredictability of the disease (I battled with symptoms for 2 years before a diagnosis and medication). Now that I'm on a treatment plan and responding well to that treatment, I feel like my old self again - back in control of my life - and I'm ready to start living as normally as possible. I'll be honest, though, one thing that I did concede on was not having another child. I have son from my pre-lupus days and we had 2 miscarriages during the last 2 years. So, while I didn't have to quit my job, I did quit trying to have another baby. I guess we all make concessions one way or another - it's different for everyone.

What fabulous comments! Thanks to everyone for sharing - so happy to hear that you guys know what I'm talking about.

Nicole - I'm hopeful that you, too, will see the benefits of a reduced work week soon. That's a huge step, and I commend you for making the connection and then taking action. That's such a big deal! You should feel so good about stepping up and making something happen. I found that as soon as my health DID start to improve, the pain I felt from not working began to lessen. In fact, that's when I decided to write my book. As the benefits of the changes I'd made became clear, I thought, "This is what I want to tell people about. This is what I wish I'd known years before."

Sadaf - Thanks so much for sharing! I'm so glad that your lupus is under control at the moment and that you've been able to resume your normal activities. Well done - you KNOW you had something to do with it...after all, you allowed yourself the 10 months to recoup.

And you're exactly right - everyone IS different, and our concessions have to fit our own lifestyle, needs and desires. The decisions aren't the same for everyone, but I believe the decision making process (the deliberation, the guilt, the reluctance to change, the desire not to give into the disease, the instinct to fight it) IS the same for most. And so that's the way my book is layed out - tackling those emotional obstacles one by one. I use the actual decisions I made (cutting off my hair or quitting my job) simply to illustrate my personal struggle with each obstacle in the process. My hope? That others realize that if I can overcome my obstacles in order to live well, perhaps they can, too. They'll be empowered to make whatever difficult decisions they need to (just like you did) in order to make life with lupus better. Again- great point...thank you!

Mumbi - Oh, that guilt. That's exactly why I put the "guilt" section in Chapter 7. Because it's so very real and so very difficult to get rid of!

What specifically worked for me was realizing the example I was setting for my employees. For so long, I thought I needed to push harder for their sake, work longer hours and make up for lost time (if I did miss) so that I could convey my committment to the team. But I was inadvertently showing them that I didn't care about my health, my body, any sort of work/life balance. And so they shouldn't either. I'm sure you do a much better job

This phrase "giving in is not giving up" has been with me since 2001, when I was diagnosed with Addison's disease...turns out I have "something like lupus," and not the Addisons. The cortisone and other prescription meds I was on saved my life and, since 2005, I have been a stay-at-home, homeschool mom. I had two life-threatening episodes that first year of illness and, I just knew that it was not my time to die and that I could, if I dug very deep, learn what could make me feel better and live better. I would say to all those who helped us so much when I was in very fragile health that "We're not just a body!" The life of the soul became central to my "healing story." Thank you for this inspiring blog. I "blog" too over at "Those That Wonder". My husband and I just bought a rental property, and I am the manager. I am frustrated at the moment because, during this semester, I have battled fatigue, joint pain and that awful internal "shakiness" that is a form of exhaustion that one really has to experience to believe. I know I am working too hard and need to be wiser, need to pull back and give in and pray more...Because my first two years of illness were so devasting, I am, in general, so blessed to be alive and enjoying my family. While my official diagnosis is MCTD (which in the truly awful days, I called "worn-out tissue disease) I know that I have lupus. After almost 9 years of living a very blessed life, I will say that the way this knocks you off your feet just when you are "standing tall" is soooo hard! I was doing so much these last three years and now I am back to struggling with my house work,getting tired from driving and nauseous and so easily fatigued. Well, thanks for lending an ear. I know you understand. As a Catholic, I feel that all the giving in that hurts me so much can help someone else -- that is a balm. You really hit the nail on the head when you talk about being forced, due to the limitations of ill health, to give up that which you had worked so hard to merit. In light of eternity, these sacrifices are so very valuable. Last, I really have to re-set priorities when a virus is going around (the kids just brought home a mean stomach bug from their Tues/Thurs private classes). I give up my plans and ask for help--which to me is still the hardest thing to do. Thank goodness my family is helpful. It is not always easy, and we are still learning how to better communicate. I have teenagers now (they were 1, 3 and 4 when I almost died)Hope to correspond more!

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Sara Gorman was diagnosed with systemic lupus at the age of 26. Determined not to let lupus rewrite her plans for the future, she fought to maintain her demanding work schedule, busy social life, and invincible attitude. But after four years of running her body into the ground, she realized she was fighting life, not living it. Committed to working with the disease rather than against it, she made it her top priority to start living well, despite lupus.
Her book, "Despite Lupus: How to Live Well with a Chronic Illness", details the steps it took to reach that goal.
In 2012, Sara also launched Sara Gorman’s Pillbags – a line of fun, fashionable pill organizers. The stylish, fabric pillbags can be found at retail stores across the country, on Amazon.com, and on her website at www.pillfold.com.
A native of Indiana and graduate of the University of Notre Dame, Sara resides in Northern Virginia with her husband and two young daughters.